Science writer Rebecca Skloot

Science writer discusses lessons learned from research for her book The Immortal Life of Henrietta Lacks.

Science writer Rebecca Skloot's work covers a wide range of topics, including race and medicine and bioethics, and has appeared in numerous publications. She is a contributing editor at Popular Science and has taught in NYU's graduate Science, Health and Environmental Reporting Program. In her debut book, the critically acclaimed The Immortal Life of Henrietta Lacks—which took more than a decade to research and write—Skloot tells the story of how cancer cells taken from a poor Southern tobacco farmer became one of medicine's most important tools.

TRANSCRIPT

Tavis: Rebecca Skloot is an award-winning science writer and the author of one of the most acclaimed books of this year. The book is called “The Immortal Life of Henrietta Lacks.” Rebecca, good to have you on this program.

Rebecca Skloot: It’s great to be here.

Tavis: I travel a lot and I’m always a pretty observant person. I have noticed on airplanes, on trains, in waiting rooms, I have seen so many people reading this book.

The first thing that really got my attention about it was I noticed a lot of Black women in my world, Black women who I come in contact with, reading this book and that’s what originally got my attention about it. So I started looking into it myself. What is this story about Henrietta? I’d heard the name before, but didn’t know the story myself.

So I knew that we had to talk because I see so many people connecting with what’s in this book and that’s important for me, because so often we see the numbers that indicate that Black women specifically fall behind in healthcare, in health treatment, et cetera.

When I finally got a chance to get the book, having said all that, it’s rare that I see a book where the cover really does tell you what the story is. They did a great design on this cover.

Jonathan, put this cover up because I want to read from it. This pretty much tells the story. “‘The Immortal Life of Henrietta Lacks’: Doctors took her cells without asking. Those cells never died. They launched a medical revolution and a multimillion dollar industry. More than 20 years later, her children found out. Their lives would never be the same.”

Now if that doesn’t make you want to read this book (laughter), I don’t know what does. Tell me more, though, about Henrietta Lacks.

Skloot: Yeah, Henrietta Lacks was a poor African American tobacco farmer. She grew up in southern Virginia and at the age of 30 she got cervical cancer and went to Johns Hopkins. She was living in Baltimore at that point. Before treating her cancer, without her knowledge, her doctor just cut a little piece of her tumor and put it in a dish, and he sent that down the hall to George Gey, who was the head of tissue culture research at Hopkins.

George Gey had been trying to grow human cells for decades and it had never worked. No one knows exactly why, but her cells just never died, so they’ve been growing in laboratories around the world for almost 60 years. They were one of the most important things that happened in medicine. She died about six months after they took the sample, never knowing that the cells had been grown.

Tavis: So the growing of these cells for all these years has meant what to cancer research, has meant what to the industry?

Skloot: The list is sort of amazing and goes on and on. They were the first cancer cells ever grown outside the body, so they could use them to study just what cancer was, how do they divide differently than normal cells, how do they spread.

But they were also used to develop the polio vaccine; they went up in the first space missions to see what would happen to human cells in zero gravity. Her cells were the first ever cloned. Her genes were some of the first ever mapped.

Some of our most important cancer medications, like Vincristine and Tamoxifen, can be traced back to her cells. The HPV vaccine – the list just goes on and on, so much of our most important research.

Tavis: How, legally, is that allowed to happen, where they can take something out of your body and, as the book cover suggests, a multimillion dollar industry is born as a result of it and you or your family see none of that?

Skloot: Well, it depends on the time period. When this happened in the ’50s, we didn’t even have the concept of informed consent that we have now. The term wasn’t even really around. This was something that they were doing to people all over the world.

They were taking samples from anyone who came into the hospital, so it was really standard practice. They had no idea in the ’50s that they could someday look inside those cells and learn about her family or that they would ever be worth money. So initially George Gey just gave them all away for free. It was later they become commercialized.

But then today, there’s still a lot of issues related to that. It’s now illegal for a researcher to just take a sample for research without telling you, but the samples we leave behind in the hospital from biopsies, blood tests, various things like that, we sign these forms that say you can dispose of my tissues any way you see fit.

You can use them in research, and as long as your name isn’t attached to them and the researcher didn’t have contact with you, they go in these bio banks and they can be used in research and it doesn’t require permission, to this day.

Tavis: So when we go in – I was in for a surgery a few months ago, minor surgery, outpatient – but when you go in for surgery, the forms that I was signing, that you sign, that we all sign, and they give you a mountain of these things and nobody – well, I should say – I know some people who are really, really anal, I guess more anal than I am.

But I try to read it as fast as I can, sign it, read it real fast, sign it. Are you suggesting to me now that we’re signing stuff away when we go into the hospital that we’re not really attuned to?

Skloot: Yeah. People often don’t really read the forms, and so often there is a line in there that says something about it. There’s a lot of debate going on about what those forms should say. It ranges from hospital to hospital.

You may go to one place and it just says you can do whatever you want with my tissues, period. You may go to another hospital and they’ll give you a book that says this is what tissue research is, this is what we do with it. There’s no sort of federal guidelines that say all hospitals have to do this.

Tavis: No uniformity, yeah.

Skloot: Right, so it’s sort of up to the place. A lot of people don’t read them and even if they do, it doesn’t have enough information, really, in those forms, usually, for you to know what it means.

People don’t read them for a lot of reasons. They’re in the hospital, they’re sort of scared, they’re going in for a procedure. They think, well, what am I going to do, say no? Then they’re not going to do the surgery. So there are a lot of big issues about how to deal with that.

Tavis: There’s a depressing story in the book about how her own – Henrietta Lacks – her own family members, years later, found themselves in need of and without healthcare, never mind all the millions that had been made and generated in this industry because of their ancestor’s cells. Tell me more.

Skloot: Yeah, that’s one of the hardest things about the story for the family is that they often – a lot of them can’t afford health insurance and they often say, “If our mother was so important to medicine, why can’t we go to the doctor and get access to some of the care that her cells helped create?” And the money as well. You can go online and buy a vial of HeLa cells for about $200, or products made using the cells that –

Tavis: Back up. When you say HeLa cells, that deserves an explanation.

Skloot: Yes, absolutely.

Tavis: They’re called HeLa cells.

Skloot: Right. They’re called HeLa, which is an abbreviation – H-E for Henrietta and L-A for Lacks. So the name of the cells is her initials, so they’re called HeLa and anyone can buy them. For about $200, you can get a vial and you can get products made using the cells up to about $10,000 a vial. For the family, who’s still struggling, they look at that and say, “Well, shouldn’t some of that come to her family?”

Historically, legally, case law-wise, that’s never been the case. There have been points in time where people have sued for property rights on their tissues and the courts have ruled against them, saying once you leave your tissues in a hospital, you don’t have any property rights in them.

Tavis: There is no adjudicating body, there is no governing board, there is no advisory panel of anybody who could say to the industry, given what we have done and made off of Henrietta Lacks, we have decided that we’re going to do this for her family. That would never happen today?

Skloot: Yeah. There isn’t really just like one big body that looks over all of it. Each institution has their own review boards that look at the different research. There’s concern within the scientific research community and a lot of these institutions that says, well, if we give the Lacks family money it would set a precedent and what about all the millions of other people whose cells we’ve used in research?

Some of that has been commercialized. Those people often didn’t know. We don’t even know who a lot of those people are or who made the money. It’s this really complicated sort of sticky issue for science, and no one’s really figured out how to deal with that yet.

For the Lacks family, one of the things about their story is that the money is just one little part of the story for them. It often gets sucked up into that issue of who should be profiting, but there are a lot of other issues. Her family was used in research without their consent.

In the ’70s, they didn’t know that these cells had been grown in the first place. She had five kids when she died and she died in ’51, and in the early ’70s, to learn more about the cells, some scientists decided to track down her kids and do research on them.

So her husband, he had a third grade education. He didn’t know what a cell was. He got this phone call one day, and the way he understood it was essentially we’ve got your wife and she is alive in a laboratory, or part of her is alive in a laboratory, and we’ve been doing research on her for the last 25 years, and now we have to test your kids to see if they have cancer.

Tavis: And that’s how they found out, 20-plus years later –

Skloot: Exactly.

Tavis: – that these cells were still living.

Skloot: Right. They thought that they – her children were all around the age of 30 when it happened, so they all thought that they were going to die and that they were getting some kind of treatment, which they weren’t, and the scientists never stopped to explain to the family what was going on. It started literally just sort of decades of scientists coming to the family, wanting things, and various sort of problems for the family.

At one point, Henrietta’s medical records were released and published in the press. So there are a lot of these big sort of ethical issues that happened to the family, but when researchers and institutions talk about doing anything for the family, it always comes back to this question of money, and the other stuff gets put to the side.

Tavis: Henrietta Lacks was an African American woman, Negro woman, Black woman. Without coloring the question deliberately, what ought we take from that? What does that mean?

Skloot: Well, her story is part of a long history of research on African Americans without their consent. In this case, they were doing this to patients, Black, White – anyone, really – but it carries a lot of weight in the African American communities because there is this really long, painful history and there’s a lot of mistrust between African Americans and scientific research. This story has long fed into that.

Tavis: So what’s the timeframe of this as compared to the Tuskegee study?

Skloot: Same time.

Tavis: Same time frame, yeah.

Skloot: It was toward the end of it. The Tuskegee studies started much earlier. But one of the things that really sort of tied the two stories together was that when her family found out about the cells being alive in the ’70s it was literally a few months after the news hit the press that the Tuskegee studies had happened.

Tavis: We should explain what that is. I jumped in there because I know it so well.

Skloot: Yeah. The Tuskegee studies are held up as one of the most famous unethical research studies done in the United States, where hundreds of African American men with syphilis were essentially studied to watch to see how syphilis killed from infection to death, and when treatment became available for syphilis, they didn’t offer it to these men, so they really just watched them die without treating them.

That study and a lot of other similar ones done all the way back to the slavery era caused a lot of mistrust in African American communities, but no one knew that the Tuskegee studies had happened until the ’70s. It hit the press and then Henrietta’s cells being alive hit the press, and so people wondered, so did they not treat her cancer so that the cells would grow? Was this another Tuskegee? That added to the fear and sort of reaction to the story.

Tavis: The new book called “The Immortal Life of Henrietta Lacks,” written by Rebecca Skloot. Rebecca, good to have you on the program, and thank you for the text.

Skloot: Thank you.

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